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Old 11-14-2011, 05:57 PM   #1
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ITP - Auto immune disease

I am a 52 year old female vegetarian/vegan for 4 years now. I have always been health consious. I exercise moderately and my weight has always been good. I had a full physical in May and all was well. Sept. I noticed a big bruise on the back of my leg. Also I had a large lump on my arm the size of an egg. I went to the Dr. to check this out. They did bloodwork. My platelets were 34,000. My Dr. sent me to a Hemotoligist right away. They put me on Prednisone. At first 60mg then we lowered it every few days. We did so many tests. We did a bone marrow test.. all was fine.. Rhumatoid Arthritis.. Kidney, Liver, Lupus, HIV, Hepatitis, Anemia, all fine. The Dr's agreed this must be ITP. Idiopathic Thrombocytopenia. Which means they have NO clue what it is or how I got it or what to do about it other than give me Prednisone. I have been on it for 8 weeks now. We started at 60mg.. it was awful. I could not sleep, hyper.. down to 40, 30, 20, 10, every time we lowered it the platelets went down too. I have done so.o.o much research on this and spoke to a few people.. one person had her spleen removed.. she always gets sick now.. one other person had several platelete transfusions.. she said the platletes rose but in no time they were low again. I went to a hollistic Dr. to get his opionion. I am taking basic vitamins and eating even MORE healthy. Nothing seems to bring my platelets up. One friend said she has had this for 12 years now and her normal level platelets are between 40 and 60 thousand without meds. She is in remission. She knows there is a problem when she gets blood spots on her body and at that time she will take more Vit. C and possibly some Predinisone if needed. I would like to try this if I could just get OFF Prednisone. Does anyone know about this crazy problem? Is it possible for my plateletes to return back to norman EVER? What the heck happened? I don't want to take Meds!! Meds are NOT natural and I don't believe they have been working for me anyway. Meds are bandaging a underlying problem!

Last edited by ljw359; 11-29-2011 at 06:55 AM. Reason: Wrong Board - Should be: ITP

 
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Old 03-05-2012, 04:11 PM   #2
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Re: ITP - Auto immune disease

Hi ljw,

I was diagnosed with ITP almost 3 years ago. (I am 47) Steroids are a first line treatment. I HATED them. Then I was put on Win rho, IVIg, and finally Rituxin. I am now on NPlate which is a Godsend! My counts have been anywhere from 70,000 to 480,000. I have finally stabilized around 150,000.

Ask your hemo about NPlate or Promacta. They both stimulate the bone marrow to produce more platelets, thus keeping up with the destruction of them by our immune systems.

Don't get discouraged. They call this ride the ITP roller coaster. You will find something that works for you, but before you do, your counts will probably be all over the place.

Good luck and God bless you!
T.

 
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Old 03-05-2012, 07:29 PM   #3
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Re: ITP - Auto immune disease

Thank you RedSummer. Are you now done with meds since your platelets are good?
Will you need to repeat this process or is it a one time treatment?

Last edited by ljw359; 03-05-2012 at 07:31 PM.

 
Old 03-06-2012, 04:55 AM   #4
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Re: ITP - Auto immune disease

Quote:
Originally Posted by ljw359 View Post
I am a 52 year old female vegetarian/vegan for 4 years now. I have always been health consious. I exercise moderately and my weight has always been good. I had a full physical in May and all was well. Sept. I noticed a big bruise on the back of my leg. Also I had a large lump on my arm the size of an egg. I went to the Dr. to check this out. They did bloodwork. My platelets were 34,000. My Dr. sent me to a Hemotoligist right away. They put me on Prednisone. At first 60mg then we lowered it every few days. We did so many tests. We did a bone marrow test.. all was fine.. Rhumatoid Arthritis.. Kidney, Liver, Lupus, HIV, Hepatitis, Anemia, all fine. The Dr's agreed this must be ITP. Idiopathic Thrombocytopenia. Which means they have NO clue what it is or how I got it or what to do about it other than give me Prednisone. I have been on it for 8 weeks now. We started at 60mg.. it was awful. I could not sleep, hyper.. down to 40, 30, 20, 10, every time we lowered it the platelets went down too. I have done so.o.o much research on this and spoke to a few people.. one person had her spleen removed.. she always gets sick now.. one other person had several platelete transfusions.. she said the platletes rose but in no time they were low again. I went to a hollistic Dr. to get his opionion. I am taking basic vitamins and eating even MORE healthy. Nothing seems to bring my platelets up. One friend said she has had this for 12 years now and her normal level platelets are between 40 and 60 thousand without meds. She is in remission. She knows there is a problem when she gets blood spots on her body and at that time she will take more Vit. C and possibly some Predinisone if needed. I would like to try this if I could just get OFF Prednisone. Does anyone know about this crazy problem? Is it possible for my plateletes to return back to norman EVER? What the heck happened? I don't want to take Meds!! Meds are NOT natural and I don't believe they have been working for me anyway. Meds are bandaging a underlying problem!

 
Old 03-06-2012, 05:01 AM   #5
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Re: ITP - Auto immune disease

I have had ITP eventually they said i had that. After all the tests you had. Now my wbc and hemo are low as well. I was diagnosed with sjogrens, which itp is a symptom, and low wbc. I also have low thyroid{hashimotos} two auto immune problems. I feel fine and have for the last 6 years since all this started. I have enlarged spleen again, it seems to go up and down. Have you got an enlarged spleen. Apparently the spleen can destroy the platelets. I am like you what the hell is next. Rhuemy has mentioned steroids, but I dont want to take them. Its not bad enough yet. I did read that shark liver oil can increase platelets. I have tryed this, I think it worked. Then I went off it for a break and now there low again. BOth my sons have had similar platelet problems, I say look at your family history and see what health problems have been there. Maybe you will find an answer...

 
Old 03-06-2012, 05:03 AM   #6
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Re: ITP - Auto immune disease

I forgot to ask What was the lump. did they do a biopsy?

 
Old 03-06-2012, 07:09 AM   #7
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Re: ITP - Auto immune disease

I had a nephew who developed it suddenly when he was 10 months old. He had the predisone and frequent blood tests for a year. After that until he was 18, it was montiored with blood tests every 2 months. It went into remission and has not returned He is 43 years old now.

 
Old 03-06-2012, 07:34 AM   #8
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Re: ITP - Auto immune disease

Quote:
Originally Posted by ljw359 View Post
Thank you RedSummer. Are you now done with meds since your platelets are good?
Will you need to repeat this process or is it a one time treatment?
Unfortunately, there is no cure at the moment for ITP, so the NPlate will be a lifeong weekly injection. I still hope out hopes for remission. I already told my doctor I will never voluntarily have my spleen removed, nor will I ever go back on steroids for ITP.

Right now, you're probably still in the "what did I do to get this" phase. Autoimmune diseases are very complicated, so there could be a million reasons it reared its ugly head. Instead of driving yourself crazy with all of that, focus on how to get your ITP under control with what gives you the least side effects. Eventually, it will become way less scary, and more a way of life once you resign yourself to the reality of it all.

 
Old 03-06-2012, 10:06 AM   #9
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Re: ITP - Auto immune disease

Hi I had Itp 22 years ago, I have never had it since. It took a long times to sort it out, nearly 10 months on steroids, I was on 80mg a day for about 4 months. Every time it was lowered the platelets dropped, but in the end it worked. I have never had any problems with itp since. I hope you will be as lucky.
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Last edited by Agenda; 03-06-2012 at 10:07 AM.

 
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